Day 190

I had a bone marrow biopsy and aspiration yesterday and it was probably the least painful that I’ve had yet (it is either the eighth or ninth). The most painful part was the local anesthetic shot.
They also did a CBC, which they do every time I go in. My blood counts were very close to last week’s, down slightly.

WBC – 3.3, down from 3.6, normal range is 4 – 11
Hgb – 11.1, down from 11.2, normal range is 14 – 18
Plt – 220, down from 240, normal range is 150 – 400

Although I didn’t get to see the doctor this time, I got a nurse to give me a copy of my lab results and I was very glad to see my liver enzymes were down significantly. My AST-SGOT was down to 49 from about 65 with 42 being normal, and my ALT-SGPT was down to 76 from about 115 with 40 being normal. I’m not letting myself get too excited this time around and I’m sort of making this up, but maybe if those enzymes stay down, they will cut back on my Cellcept (anti-rejection) this week (if they wean enough, do I become a weanie?). Maybe it means my new immune system is backing off on its attack of its host. I can hope without getting overly excited.

Meanwhile, I continue to feel quite good. I seem to have a runny nose today and hope it doesn’t get much worse.

Love,
Justin

Day 182

I went to my clinic appointment yesterday (now normally biweekly) and things went well. I noticed that I feel good now when my blood labs show nothing is worse. Compared to 2 weeks ago, all my blood counts were up slightly, my liver enzymes were very close to the same (a bit high), and my creatinine level was fine (meaning my kidneys are doing OK). While the hemoglobin is up a bit, which is good, it is still below normal of 14 and I still get winded easily. Then again, maybe I’m just horribly out of shape.

WBC – 3.6, up from 3.2
Hgb – 11.2, up from 10.2 (and the PA says it’s the highest it’s been since November)
Plt – 242, up from 221

So my meds are all staying the same, and since I’m very close to six months post transplant, I need to have another bone marrow biopsy and aspiration done (woo hoo). It is scheduled for next Friday.

I asked Dr. T if he considered my GvHD to be at Level 1 and he said he did. I asked him if I would know if the GvHD in my liver got worse and he said that normally I would not know unless it got much worse. This is part of the reason I was glad to see my liver enzyme levels were no worse than 2 weeks ago. I asked him if the reason he wanted to see some GvHD was because if meant there was a much smaller chance of relapse of the disease (essentially leukemia) and he said that was the reason. He said the odds of cure are much better if there is some GvHD because it means my new immune system was indeed doing what it is designed to do and that is to attack anything which is not it. In addition to fighting its new host, it is probably also killing off any remaining diseased bone marrow, which he says can definitely hang around in quantities too small to detect in the blood or in the marrow. So once again, it will be good to get those chimerism studies back a couple of weeks after the biopsy/aspiration and still see 100% donated bone marrow.

So I’m feeling pretty good about my current status. I’m feeling OK, I’ve got some GvHD, and it doesn’t seem to be getting worse. Now if I could just hurry things along some.

Love,
Justin

Day 168

After two weeks of being down to one Prograf (anti-rejection) pill per day, I was feeling pretty good because I still had almost no increase in any GvHD symptoms. Then I went to the clinic yesterday and found out that I have probably been overoptimistic (more below). My blood counts were not bad:

WBC – 3.2 (without Neupogen), down again from 3.7 two weeks ago and 3.9 three weeks ago, but not terrible
Hgb – 10.2, up from 10.0 two weeks ago and still below normal (14)
Plt – 221, up from 195 two weeks ago and satisfactory even if a bit below normal

The PA (physician’s assistant) said I looked good and things seemed great. The doctor (Dr. T) said that things were good and there were indications in my blood that my liver is being stressed. He also said that he is glad to see the liver indicating a higher level of GvHD because he would still like to see more. Liver stress or damageis detected primarily by looking at the levels of 2 liver enzymes in the blood called aspartate aminotransferase (AST or SGOT) and alanine aminotransferase (ALT or SGPT) More information on liver blood tests . Dr. T said that normal levels are in the 40 – 50 (units per liter of serum), and today, mine were at about 65 and 115 (my memory is not precise about the numbers he quoted). He quickly added that the levels can get up into the thousands, so there’s no cause for great concern right now. However, potential liver damage is serious enough that I am being put back on Cellcept (I was taking it through sometime in November) which is another anti-rejection drug, but one that is more effective with liver reactions than my Prograf is. I am also staying at my current level of 1 pill a day of Prograf and adding Protonix back in for preventing heartburn because the Cellcept can be hard on the digestive tract.

I asked Dr. T about what my odds were now compared to the 50 to 60 percent chance of cure that he quoted to me pre-transplant. He said he wouldn’t change those odds yet because he still wants to see more GvHD, and that if I got some level 2 reactions in the next 6 to 12 months, he would increase the odds to 80 or 90 percent because of a higher level of confidence that my original disease would not make a comeback. After a year or two of being disease-free, the odds would increase even more. I tried to call the doctor on the phone today (without success) to ask him about whether and how level 2 GvHD involving the liver would be manifested for me. Right now, I can’t tell my liver is having trouble; it’s distress is only detectable by the blood tests. I’ll try to remember to call him again next week.

Adding Cellcept back into my drug regimen means that I am also going to become a bit more immune compromised again after becoming less so for a while. This is the reason for my feeling of disappointment. I allowed myself to think and hope I might be very close to a more normal life because if I just had my Prograf reduced once more to 0 pills a day, I would soon be no longer immune compromised. Now it seems clear that I’ve probably got months to go. When this all started, the doctor said to expect to be out of circulation and unable to work for a year. I knew it could be more and could be less and I thought it was starting to look like it might be more like 6 months for me (which would be in about 2 weeks), but now I can see that a year is likely and more than a year is possible.

I’m thinking I was also probably overoptimistic before when I said earlier that it was hard for me to imagine that my disease could relapse now. Although I’m not going to imagine that it will, seeing that it seems to be Dr. T’s greatest concern has modified my view. I will also hasten to point out that the disappointment, while real, is relatively minor. It is easy for me to realize and be grateful that I’m feeling as well as I am and that if it takes another 6 months or 12 months of being immune suppressed and I am eventually cured, it’s a great deal. Right now, I’m feeling well enough that I’ve been working in the range of 30 hours per week. I can do another 6 or 12 months of this – I could do more if necessary.

Some other good developments are that with the decrease in Prograf, my kidneys may be functioning better, possibly leading to an improvement in my hemoglobin levels, as well as reducing my creatinine levels. Lower creatinine levels mean I don’t need as much hydration which led the doctor to take me off the twice weekly saline infusions. This is nice because each infusion required me to carry around the saline (with magnesium) and pump for 4 hours. This also means that I will no longer be having a nurse visit me at home once a week, at least for now. Further, if my creatinine levels stay down, they will probably have my catheter removed, which means I would at least be able to shower normally without having to worry about getting the catheter site wet. Catheter removal will be evaluated at my next clinic appointment in two weeks.

Well, this is getting a bit lengthy, so I will bring it to a close. The summary is that I am still doing well, but suddenly had to make a shift in my expectations from thinking I might be very nearly out of the woods to realizing that I’m only half way through the woods at best. Having to make this shift came with some disappointment for my wife as well as for me, but not enough to lead to total discouragement. Thank you for hanging in there with us. It’s good to know we still have a team of people cheering and praying for us.

GO EAGLES!

Love,
Justin